Day 0

WBC- 0.2
Hgb- 9.1
Hct- 26.9
Plt- 39
ANC- 0.0

It happened. T day. The day we have been waiting for. David described it as being similar to having our babies. You wait and plan and do everything the doctor says, then you give birth. After that you have more worry and sleepless nights and pain and unknown, but at least you have gone through the labor part. I didn't sleep much last night. Come to think of it, I never slept the night before going into labor. David spent the night at the hospital with Claire, and Faith and I woke up before the sun to arrive at the hospital at 5:45. Claire has been to the OR several times, so I recognized  most of the nurses and techs. It was strange to be there with a different child. After all of the prep, Dr.H talked to us (He's very personable and chatty and Midwestern. We like him quite a bit.) and our nurse practitioner D talked to us a little more, then the anesthesiologist took Faith back. When the doors closed I was hit with a flood of emotions. I have to admit, I don't think we ever asked Faith, or any of our children, if they would donate. It was always just assumed that if they were the match of course they would. And Faith has carried it like a champion. But as they took her away, I was so touched that she would give a part of herself so her sister could live. Shed her own blood willingly. I don't take that lightly, and am grateful that the gift of life through blood was also given to me and to each one of us.

It was interesting being on both ends of this process. Often a donor is unrelated so you don't get to see both sides. It took two people extracting from both sides of Faith's hips two and a half hours to pull out just over a liter of thick, healthy marrow. Dr.H had a blister on his hand by the time he was done, but he was excited they got so much. He explained to me that (I'll try to get it right with my actor's brain) the minimum goal is to extract 200 million nucleated cells per kilogram of Claire's weight. Of that, 1-5% is stem cells. They extracted 436 million nucleated cells, with 1.1% of that being stem cells, so about 5 million, which is within the desire range. And they give us this info off the top of their heads! Several of the nurses who have been there a long time said it was the biggest bag of marrow they had ever seen. The infusion took about 4 hours, and Claire didn't have any reactions as it was going in. Our amazing nurse stayed in the room the whole time and did vitals every 15 minutes. Faith (and Ella) were able to be in Claire's room with her. On a side note, I have to give a mention to the parents in the OR waiting room. What a range of emotions sits in that space! I was telling Claire's story to my seat neighbors, and the woman said that all of that might have pushed her over the edge. Her friend then quietly said that we might think that, but the edge just keeps shifting. As I left, she gave me a hug. The kindness of strangers.

Now we wait. We wait for engraftment, when her new marrow starts producing cells on its own. Then we wait some more. In the meantime, Claire has open sores on her tongue and down to her stomach and has started pain meds to manage that. She will probably stop eating soon. She has a suction tube to manage the excessive mucus. There will probably be bone marrow pain. She will undoubtedly receive many blood and platelet transfusions. There will be pain if she develops graft versus host disease. (Surprisingly, they want a little graft versus host. It is called graft versus leukemia effect.) We pray that while she has no immunity she doesn't develop any infections, and that her liver keeps doing its job (and her kidneys and her lungs). But today we celebrate.

        Thumbs up before surgery.

      Groggy and a little weepy (common in teenage girls) after surgery.

        Pink lemonade slushy (the best flavor, FYI) brought to us by our nurse friend.

       It's no wonder Faith was a little pale after all of this came out!

     The whole team singing Happy Bone Marrow Birthday!

        Dr.H looking pretty happy

                   Every last drop.

Day -2

WBC- 5.3
Hgl- 9.2
Hct-27.3
Plt- 82
ANC-5.2 (5200)

These counts are deceptive. Her whites blood cells and her ANC have jumped up because she received several doses of the drug dexamethasone after her concentrated chemo on Thursday. It is a steroid used to counteract the side effects of the chemo. Once it wears off Claire's counts should drop considerably. She is starting to feel some mucositis (mouth sores that go down much farther than the mouth) and has had tolerable headaches and trouble sleeping. She has had a few days of rest and recovery before the big event on Monday.

We love our nurses. Occasionally we might get someone who is a little too chipper for Claire, but they are all great. Not all of the nurses are transplant nurses. That requires some extra training. But I think that there is something about working in a children's hospital that makes the nurses a little more nurturing and personable. We were supposed to go the Huntsman for the transplant because of our insurance, but we appealed and Primary decided to work with us and we are here. Don't get me wrong, Huntsman is great and the care is excellent, but there are no children. And I love children. My mother loved children. From what I can tell, all of my children love children. My BFF across the street is is 3. He calls me Big Mary, so people don't confuse me with regular Mary, another 3 year old mutual friend of ours. Claire and I were recently sitting in the oncology clinic when a little boy was riding a big wheel down the hall. His mother said to him, "If you run into one more person, I'm going to make you get off!" Claire and I just looked at each other and smiled. Kids don't always dwell on the fact that they are sick, so they aren't always sad about it. You peek into the rooms here, and you see them sitting on their beds or on the floor, often with siblings, playing. They have colorful blankets and posters on the wall. Claire was singing with the music therapists on Wednesday. There are animals and art therapists. The little boy in the room next door was holding the door open the other day. His tech told him that he couldn't leave the room. He said, in a very loud voice, "I'm not leaving. I'm holding it open for YOU!" There is a lesson in there about how to live life. Children live with joy.

Btw, I really miss my parents.

Day -5

WBC-1.4
Hgl-11.0
Hct-33.6
PLTS-78
ANC-1.0

Yesterday our radiation oncologist Dr. P, who we don't see every time, walked up to Claire, took both of her hands in his, and said, "Well. You're a fighter." They were all very concerned that Claire would have a lot of trouble with her radiation regimen. In fact, after our first planning session (which was the day after surgery to place her central line) I got a call from one of the docs saying they needed us to come in again. They wanted a Plan B in case Claire couldn't stand up, and they needed to measure her lying down to see if they could get her very long body in the radiation field. I told him that I thought a Plan B was a good idea, but that I really believed Claire could do Plan A. Apparently no one believed me, but she has totally rocked radiation. One more session this afternoon, and the biggest part of her conditioning treatment is over. She might actually miss being able to leave the hospital twice a day. (We are shuttled to the Huntsman Cancer Institute just up the road. The view on the way home looking over the Salt Lake Valley is spectacular.)

After her early radiation treatment this morning, the transplant Dr. H, the transplant nurse practitioner  B (who is a patron of PTC), and our amazing nurse Kathy from Boston did rounds. Well, by rounds I mean that they listened to Claire's chest, then talked about school and books (Dr. H's wife is a young adult author. We are planning on buying Demon Derby on Amazon today) and stuffing waffles. I always appreciate the time they take to get to know Claire. I mean, they are all her biggest social outlet right now. Of course, my mother brain had to make sure that the radiation is doing its job even if Claire isn't getting sick. They assured me that it is. Tomorrow she will receive her four hour infusion of Etoposide, and the conditioning part of treatment will be over.

We also had some lovely visitors yesterday morning. Our friend came up  with her adorable little therapy dog, and another friend who is Claire's age and just a few months ahead of her in the BMT process and her mother stopped by with gifts and encouragements. It was amazing to see how well she was doing. And at the same time, our hearts are turned toward London where our very dear friend is suffering through very difficult treatments and side effects. In the world of pediatric cancer, it seems that one day you are fine and the next day (or minute) you are not. So you learn to cherish the good moments you have and you pray your way through the bad ones. And you learn to be present, knowing that life is precious and fragile. And you find joy in collecting fish for your virtual fish tank (Claire) or Diet Dr. Pepper and tapioca pudding (me) and show tunes (all of us). Happy Thanksgiving.

Day -7

WBC - 3.8
(white blood cells, part of the immune system, helps fight infections, normal range is 4.5-12.5)
Hemoglobin - 11.3
(part of the blood that contains iron, carries oxygen through the body, and gives blood it's red color,
 normal range 12.0-16.0)
Hct - 33.5
(hematocrit, the proportion of your total blood volume that is composed of red blood cells, normal  range 36.0-46.0)
PLTS - 90
(platelets, cells that circulate in the blood and clot to keep us from bleeding, normal range 150-400)
ANC - 1.9
(absolute neutrophil count, measures your risk of infection, normal range is 1.8-8.0, anything less than .5 is defined as neutropenia and significantly increases the risk of infection. Claire will eventually be at 0, and will need to be at .5 for three consecutive days to be allowed to go home.)

I kid you not, the song Radioactive started playing when we got in the car this morning. Crazy life moment. Claire was surprisingly chipper as we made our way to the hospital. I asked her why, and she said that we have been waiting so long for this next inevitable step, and she was excited to finally do it and get it over with. She had the first appointment of the day in radiation oncology for her first of six total body irradiation treatments. She tolerated it surprisingly well. The effects are accumulative, though, so it won't stay this good. When she went in for her second treatment today, the technician asked how her day had been. Claire said that she had been pretty lazy, just lying around in her hospital room. The technician said, "What? Did you have a big to do list that you were hoping to work through?" I love that people who work with cancer patients usually have pretty good senses of humor. And they all loved the brown butter chocolate chip cookies that I took them this morning. You can take the girl out of the kitchen, but... http://www.kingarthurflour.com/recipes/joys-brown-butter-chocolate-chip-cookies-with-pecans-recipe (because I know that someone will ask. The pecans are unnecessary, btw)

For whatever reason, Claire has felt better the last few days than she has in a very long time, despite the fact that she had to go to the ER Wednesday night for a fever and they kept her Thursday night, too. Red blood, fluid, and hot chocolate made her feel much better. Friday she walked all over Costco and Trader Joe's with me. Saturday we put up our Christmas tree, went to the aquarium (I know. We live in Utah. But we like it.) and went out to dinner, where she ate artichoke spinach dip, ribs, and fries! She won't be able to go to a restaurant for a very long time. And while I'm on that subject, she's on a reduced microbial diet, so if you want to bring her a food gift sometime, it needs to be individually packaged. No fresh fruits or vegetables, and nothing that has been cooked then cooled a little bit. And she can't have any fresh flowers or plants in the hospital or when she comes home. It's amazing what we do that we don't even think about as being potentially harmful. (Lettuce? No way.)

Tonight I am thankful for my family, my faith, my friends, time killing electronics, and amazing nurses, techs, and doctors who become family in situations like these. As we walked onto the immunocompromised unit this morning, everyone had a big smiles on their faces as they shouted out, "Hi, Claire!" It made it feel almost like home. Or at least a very expensive timeshare.

                                           At the aquarium

Lung plates are in place. They are made of lead and are very heavy. The funniest thing was that with all of the amazing, high tech equipment in this room, they rolled in an old tv on a stand with a VCR/DVD player for Claire to watch a movie.

A welcome back note and pictures starting to go up on the walls.

Sometimes, for just a few moments, I forget. We could be driving, singing in the car, watching a tv show, and things seem so normal that I forget how sick Claire is. Then it will hit me with such a force that I feel like I am going to break down and cry. Oh, yeah, Claire has cancer. Again. But she is still the same person. Her humor, her tastes, the things that make her laugh, the things that make her grumpy are all still there. Cancer doesn't change any of that. But it does change you and the people who love you. I asked Claire if she ever had that slam of remembering after forgetting for a few moments and she said, "Yeah. Pretty much all of the time."

Today we started cranial radiation. One of the hardest things, and it will be this way for total body radiation, is that after the many technicians and doctors tweek and calibrate and set everything up, everyone leaves the room and Claire is alone. Just her, her cancer, and her treatment. I can't tell you how that feels for Claire. She does have a gift of being able to go into this still, zen place and see things through. But I can tell you that for me it is heart wrenching. I am a woman of faith, and today as I left the room I couldn't help but think of Jesus on the cross asking his Father why He had forsaken Him. And I think of the pain that God must have felt at having to allow His son to be alone in His time of pain and distress. Some paths must be walked alone, I guess. But Claire is never really alone. And that gives me some comfort.

Yesterday Claire had to sign about a million consent forms. Consent to be treated, consent to store the stem cells (which, once they leave Faith's body, are legally Claire's), consent to be treated for potential side effects, consent to be involved in a few medical studies, consent to have her information registered with the government so they can follow her health for the rest of her life. She also signed an Advance Directive. Yes, I had to discuss end of life wishes with my 19 year old daughter. I told her my end of life wishes. And yes, we both shed tears. But in the middle of all of this information and paper signing the doctor used the word that every cancer parent yearns to hear. Cure. The hope, the plan, is that this will be a cure for her. And we are going into it under the best circumstances. Despite her obvious weakness, there is no detectable disease in her bone marrow or her spinal fluid, and no detection of the Philadelphia chromosome. (In cancer speak that is 0 MRD,  0 CSF, and 0 bcr-abl, I think) But the journey will get a lot harder first. Do you think it is possible to hold our breathe until March?

This past weekend the husband and I actually went to a movie for the first time in forever. We saw The Martian. I loved the end when a student asked Matt Damon if he thought he was going to die. He replied that there would always be a time when they would think they were going to die. But you just solved one problem at a time until you realized you were going to live. Well, ok then.

          A much bigger breakfast than Claire could possibly eat at Huntsman.

When Claire noticed that her bandages looked like a Hun hat, she made me draw a thumb hun. Darryl.

Getting ready for her first of three cranial radiation sessions.

Well, we made it through our scheduled week. Provided nothing unexpected happens, ( too bad we always have to plan for the unexpected ) we won't have to go back until Tuesday. The week started with Claire having surgery and ended with lots of transplant education. Claire now has a triple lumen broviac. It is a central line with three ends, all of which will be used during transplant to give her nutrition, antibiotics, fluids, medicines, chemo, and the stem cells. It makes bathing, which needs to be done daily to reduce the risk of infection, challenging at best. Because her platelets are on the low side it is taking the incision where her line comes out a while to clot and heal. Our body does things that we never even think about! Claire's dentist was surprised that they prefer her to not floss during this process, but when you have very low platelets, any bleeding is very hard to stop. And if you have no white blood cells, any open tissue is an invitation to bacteria that can eventually find its way into her blood stream. And once bacteria is in her blood stream, things can go very bad very quickly, as we have already experienced.

I think Claire and I were both a little overwhelmed by our radiation consultation and planning meeting at the Huntsman Cancer Institute. She had about 8-10 people around her, measuring and planning how her TBI would go. The amazing thing in situations like that is that they all seem to really know her, call her by name, and act like she is the only patient they need to worry about. As overwhelmed as we might have been, Faith was probably even more overwhelmed by her appointment. Before her blood draw, her blood pressure was pretty high. (After the draw it was quite a bit lower. Stress! ) When she saw the nurse lay out several vials for her blood, she actually started to see spots in front of her eyes. As they were drawing blood she got very cold and clammy and broke out in a sweat on her upper lip. One of our cute nurses came in with some juice and a cold pack and helped her to lay down. She recovered quickly after the blood draw was over, but I think she got a little taste of what Claire goes through all the time. On a weirder note, the child life specialist did tell Faith that if she murdered someone she could totally pin it on Claire because they would have the exact same DNA for a while. Umm, ok. Faith is 14, but ok. Interesting, I guess. But pretty weird. In all of the preparation, I really appreciated that the social worker today said that she usually tells families to prepare for a level of illness that they haven't really experienced. Then she said that probably wasn't applicable to us, because she felt that we have already experienced that level of illness when Claire relapsed and was in the hospital for six weeks. I appreciated that recognition. Earlier the radiation resident was going through possible risks, and he very soberly told us that radiation could potentially cause a secondary cancer in the future. I looked right at him and said that everything we have done so far could cause a secondary cancer, but we were willing to jump off that cliff in the hopes of giving our daughter a future. Sobering, indeed.

On Wednesday night we had an amazing experience. Families from our church congregation met together to join in prayer for Claire and our family. They then fasted until around 11:00am on Thursday, when everyone, joined by friends and family in many other places, prayed for us again. We were so moved by this expression of love and faith. It was truly an example of bearing one another's burdens and comforting those that stand in need of comfort, and we will never forget it.

             Preparing for total body irradiation. No one is ever quite prepared for how tall Claire is! (5'11")

                             Getting measured by the team.

                                       Cranial radiation prep

     Preparing her cranial radiation mask. Claire loves the show Face Off, where make up artists create fantasy type make up with lots of  prosthetics, so that was her visual for this process.

        Seeing our cute friend and old neighbor in the OR recovery room.

             Faith getting vitals as part of her pre transplant work.

                                         Giving blood isn't always easy.

No kidding, this morning I woke up with John Meyer's song Stop This Train going on replay over and over in my mind.
"Stop this train
  I want to get off and go home again
  I can't take the speed it's moving in
  I know I can't
  But, honestly, won't someone stop this train?"


Today the train leaves the station. Decisions have been made and we are on our way. I am writing this from the hospital. This morning Claire has a bone marrow aspirate and biopsy, a lumbar puncture to put the drug ARA-C into her spinal fluid, and she is having a triple lumen broviac placed. That is a central line where things can go in or out without having to put in an IV. She had a port, then an infection which necessitated port removal, then a PICC in her arm, now the better and more permanent broviac. On Tuesday she has a radiation consult and a radiation planning session, on Wednesday Faith has donor pre transplant labs, child life prep, and a donor consent conference, and on Thursday Claire has another pulmonary function test, echo and EKG, chest x-ray, nursing education, dietary education, pharmacy education, and finance meetings. Then there is a little break. The following Tuesday we meet with social work, child life, and Claire has a consent conference. On Wednesday the 18th she starts three days of cranial radiation. She has Saturday off, then on Sunday will start total body irradiation twice a day for four days. They are still deciding if this will be done in or out patient. But she will definitely be in by Thanksgiving when she does her high dose Etoposide (chemo). Then on Monday the 30th is what they will always refer to as her bone marrow birthday. Faith checks in at 6am to donate, and Claire will receive her sister's stem cells later that same day. All of this will be done at Primary Children's hospital except for the radiation, which will be done at the Huntsman Cancer Institute. Then we wait. And wait and wait. She will be in the hospital for 3-6 weeks and will be in isolation at home for another 100 or so days after that.

When Claire was about 11 I decided that I needed to work on my relationship with her. She was a little odd and quirky, and I was a very busy and tired mom of 6. So I prayed and asked God to teach me what I needed to do to build our relationship. He told me to really look at her when she talked to me. To make sure that at least once every day I put down or stopped whatever I was doing to really see this daughter of mine. To see past the things that might appear odd or quirky and to look at her heart. And as I did this, our relationship changed. Now, I don't believe that God gave Claire cancer, or that He gave us this challenge as an answer to my prayer or to test us in some way. I really, really don't. I do believe that we live in a world where horrible things like childhood cancer happen, and when they do, God walks that path with us, holding us in His arms every step of the way and giving us blessings that we might not have received any other way. And I also believe that the relationship I have with this daughter of mine, who I help bathe and go to the bathroom, who I hook up to IV's and feeding tubes, who I spend countless hours with in the hospital, who is my duet partner in the car anytime Pink's song Just Give Me A Reason comes on the radio, is one of the most precious things in my life. She is still odd and quirky, and I love it. She also has a depth and strength that she very rarely reveals to others, but it's there. And she has the driest wit. Since I started this post with song lyrics, I will end it with some lyrics we heard this morning on our way to the hospital. Live Like You Were Dying came on the radio.
"I went sky diving
  I went Rocky Mountain climbing..."
Claire turned to me and said, "I wish! This is the most unrealistic song. I mean, I get the sentiment, but when your doctor tells you that you are sick enough to be dying, they don't just send you out sky diving. They hit you so hard that you can't do any of that stuff. Seriously!" Ok, you've gotta love this girl, right?

Again, I can't figure out how to caption pictures, so here is one of Claire having a blood draw today, (she also had to give urine, just in case she somehow got pregnant since her last procedure), one of yesterday's Thanksgiving dinner (since she will be in the hospital in actual Thanksgiving), and one I just had to take at church yesterday of Claire and her twin.

The liver. It is the body's largest gland. It's a vital organ that supports nearly every other organ in the body in some way. Without a healthy liver, a person cannot survive. There has been a lot of discussion about Claire's liver. During her first month of relapse treatment it was damaged. In fact, after she came out of her semi comatose, delirious state in the ICU, she didn't want to look at herself in the mirror because she was so yellow, from her feet right up to the top of her head. Since then, her liver function and bilirubin levels have slowly returned to normal ranges. We were all thrilled that, after her open liver biopsy, the lesions that were showing up on her liver weren't infection or leukemia, but were just scar tissue. But scar tissue is an issue itself. It is called fibrosis, and in the liver it is staged, with stage 4 being cirrhosis. If Claire's liver has too much scar tissue keeping it from doing what it is supposed to do, it won't be able to handle the full radiation (TBI, or total body irradiation) the transplant team hopes to do. They can't risk liver failure. So yesterday we went to the liver clinic. It seems to them that Claire leans closer to stage 2 fibrosis than stage 3, which is good. The doctor told her to avoid alcohol (check), don't misuse acetaminophen or ibuprofen (check), avoid herbal supplements which can also be hard on the liver (check). He said that he is encouraged moving forward. Now our transplant doctor has to make some very hard decisions. We have been frustrated that we keep being delayed. It would have been nice to have Claire home before Christmas. It would be nice if she could start school next fall. But of course, those things don't matter to the transplant team. And they shouldn't. They are making decisions based on trying to save my child's life. Perspective. These were the things we discussed in clinic today.
On Monday Claire will go to the OR (again) to have her new central line placed, and have a bone marrow aspirate and a lumbar puncture to put more chemo into her spinal fluid. On Tuesday we meet with the radiation team for a consultation. Hopefully they will have decided if she is having TBI by then, or just cranial radiation with more chemo. It is important to radiate her head, because the brain is sanctuary for leukemia cells. At her age, the brain is quite protected, so it shouldn't cause any permanent damage. Back in the 50's and 60's, when they were starting to tackle childhood leukemia, the brain was the place where most relapses occurred. (If you haven't read The Emporer of All Maladies, I highly recommend it.) So the brain has to be treated. Then she should start radiation the following week. Claire hasn't had radiation before, so this is really unchartered territory for us. One day at a time.
As all of this is happening, I've been thinking about my other children, especially my two younger daughters. My youngest daughter has struggled with anxiety since Claire's first battle with cancer. She is also quirky, and not always great in social situations, which can make it hard in our neighborhood and at church. (A lot like Claire at that age, actually) This week she was left out and even lied to by the neighborhood clique, and a few other girls complained about her to me. My second youngest daughter (Claire's donor) holds all of her emotions in, hates drawing any attention to herself, and can carry the weight of the world on her shoulders. And, if I'm being honest, Claire has not had much patience with her younger sisters. And I really love all of my children for who they are. But it still just breaks my heart. Being 13 and 14 is hard enough without having cancer in the picture. The truth is that siblings of cancer patients are fighting the battle, too. People, especially young ones, tend to forget that. So, if you are the praying kind, please include my other children in your prayers. Thanks.
I can't figure out how to caption these pictures, but the first one is Claire on Halloween (the last airbender, the series not the movie, haha), our crazy pumpkin display, and Claire learning how to do family history with one of our fabulous neighbors.